On having MF in Britain.

[Gipsy123]

Dear fellow MPNers . Happy New Year.

I also fell foul of differing local criteria for transfusions: in Edinburgh, where I’d moved to partly for the good NHS service , it is indeed Hb below 80. Edinburgh also has a strange attitude to letting ine see ones own blood result -even when I was in the course of having a unit of blood transfused, the nurse/HCA wouldn’t let me see the latest set on the grounds that they were ‘confidential.’ !!! The haematologist I saw was excellent, as was the GP I saw (I recommend the University Health Centre in Bristo Sq) , but the was no NHS skin cancer care at all. None. So I had to pay for an (excellent) private dermatologist too excise a lump from my leg, and then pay for the genomics. Happy to share names of doctors if anyone wants them.

I’m recently widowed, and have to handle all my own care. Feel like giving up at times. But no options. I’m back in Surrey, and have been seen by Prof Harrison at Guys for shared care with local haematology team at East Surrey as . I’m ’out of area’ but that’s fine by me. She prescribed momelotinib for me -supposed to cause less anaemia, but needs regular blood tests to make sure its not messing up my liver function. GP can do these

My new GP practice in Dorking is rated ‘outstanding’ by CQC. Huh, is all I can say. Yes, they did the blood tests but getting hold of the results to feed back to Guys was a nightmare.

I did it, and then discovered that the EPIC based MR system Guys uses can’t show me the results in my record that have been received from outside sources -so I can’t check what’s been sent.

No idea what information if any will have been sent to East Surrey -have a haematology apt there on Monday 6th The person on the phone who offered me the appointment said no need to get new blood tests. But I’ll get there early enough that I can. Re blood tests at Guys -phlebotomy department opens at 8.30 if you want bloods to be usable on the day, strongly recommend earliest possible blood draw. Or ideally get them done a couple of days in advance. Having an appointment with a world leading haematologist like Prof Harrison and no up to date blood results from a blood draw at the hospital is crap. Prof Harrison has arranged for me to have next bloods done at Guys, a couple of days before the telephone F U..

Am telling it like it is.

So, I’m being seen at the Marsden in Sutton, for continuation of skin cancer follow up, East Surrey Hpspital by an unknown haematologist for MPN/ general haematology, with Prof Harrison in the background. Momelotinib is on a national list, she says, so East Surrey can prescribe. [If not, can get it from Guys. ].

Rachel

[Cja1956]

So sorry to hear what you’re going through. Even though our country has its issues, our freedom of choice and quality of care far surpasses those with socialized medicine. At the very least, you should be able to see your own results. I wish you the best, moving forward.

[Gipsy123 in reply to Cja1956]

I disagree with your views on best ways of funding healthcare. ,

[hunter5582]

It sounds like you are doing a good job being your own medical case manager. While it can be a lot of work, it is worth the effort.

I believe that you have a legal right to access your medical records under the Data Protection Act (DPA) 2018 and General Data Protection Regulation (GDPR). Unfortunately, some practices may put unnecessary barriers in place to accessing your labs. This is due to an antiquated authoritarian medical philosophy that has no place in modern medicine. The more appropriate practice is to automatically post all of your labs a reports in the patient portal where you can access them yourself. That saves staff the need to print them for you and optimizes you access to your own records.

Wishing you continued success and fewer hassles moving forward.

[Inca]

That’s awful Gipsy,I have my blood results given the day I have my ‘pris de sang’.When I need a transfusion my consultant phones & I go into hospital early ,have the transfusion ,out after lunch also provided by hospital.When I read about others suffering the same I am scared to come back to U K to visit our daughter.So she flies to us often,as she finds it hard to even get a G P appt.

If I need my G P ,I get my appt immediately,have a nurse every week .,for bone marrow injections & blood tests every two weeks.Best of Luck to you ,Hope N H S improves.😂

[Gipsy123 in reply to Inca]

Thanks, Inca -wrote a longer reply which vanished when I tried to send it. Not my day. Am visiting sister in Paris in a few weeks -will be interesting to compare notes.

[RCBr]

I use the NHS APP for lots of things. It's great for seeing test / blood results that are ordered by your surgery. There is much more the App now than there was initially.You are entitled to see your own results.....there are yours after all.

Maybe send an email to the Practice Manager expressing your concerns x

Rachel x

[nellietheelephamt]

I have to do a Subject Access Request to get my test results. It's a 10 page form which has to have my signature witnessed by a registered professional and I have to provide 2 forms of ID. It can take 28 days to get the results which come via the hospital's legal department.

[Trocken]

I use the NhS app for tracking my blood-work, appointments etc it’s great. I also am linked to the following site my.patientsknowbest.com

This link was provided by my nephrology professor, but it allows me to see all my blood work conducted by our neighbouring hospital where both my Haemotology and kidney specialists are based. Ask your hospital what patient records access you can have, they do exists! If you get know where I suggest speaking to Pals.

Unfortunately until the NHS as a whole join up systems it’s very patchy and equally frustrating for staff!

[grandpa101]

Hi what an unrealistic mess I myself am based in Scotland but fortunately in the Highlands where I get great coordination between local and hospital care sorry you are not getting the same

I was thinking of moving back to Surrey but not so sure after your lack of care. Seeing my haematology dept tomorrow talk is of going on to momelotinib to help with severe anaemia

Love to you

[Gipsy123 in reply to grandpa101]

Hi Yes, the various Scottish Health Boards have very different policies. I’d suggest starting momelotinib before you move: wasn’t available in East Lothian. Glad to know there are some good models of health care.

[lizzziep]

What is it with hospitals being reluctant to let you see your own results? I used to get a print off of mine when I visited haematology but now I have to ask to take a photo of the doctors computer screen so I can see them all. On phone consultations he’ll only tell me platelet and hgb if I ask.

I use the nhs app to see results from the GP, if you take a screenshot of your blood results from there you can send it as an email attachment to Guys, I’ve done that.

Two tier Keir says he’s going to extend the app so patients can see results and make hospital appointments - but don’t hold your breath!

I’m also on Momelotinib, my anaemia has improved on it but platelets went up so have had hydroxy added to lower them, currently reducing that.

[Gipsy123 in reply to lizzziep]

Guys med sec, Daniel, doesn’t like screen shots and won’t accept them any more. I went to huge efforts to get a pdf from GP. Sent it to Daniel, couldn’t see it MyChart, and was told by Daniel that no, I could n’t see anything from an external source. 🤦‍♀️🤦‍♀️Quirk of EPIC.

[Loubprv Volunteer]

Crikey The sooner the NHS is privatized the better!!

What a,shambles

[Inca in reply to Loubprv]

Really Louise ,I would like to come home to U K ,I just know I will not get the care medically that I get here….I had a day in a U K hospital after a stray dog attacked my dogs ,in the melee I was knocked unconscious on the road my head bleeding profusely,we did get an ambulance ,they were very good ,straight to hospital ,yes they scanned my head but no Dr in the place knew what my P V was or how to help me recover! We take all my med papers with us,my poor hubby translated as much as he could…….honestly it was an absolute farce….I lay all that day in a blood soaked pillow & bed…….not even cup of tea for hubby sat by my bed!!! At 9 pm they told me no fracture & gave me a leaflet on head injuries to take home,they needed the bed as at it was getting to the time Urgence would be busy with drunken fight injuries & the one nurse who did try to care for me was needed.!,She was very caring actually but rushed off her feet!!!This was just before Covid….I have not been home since……maybe things are better now….this was a big hospital in a city ,not small town clinic. I really worry for our daughter living & working in U K.

[Inca in reply to Inca]

Sorry lost reply to you ,Happy New Year Louise.Love & Good Health!

[lizzziep in reply to Inca]

That’s not unusual, unfortunately! There doesn’t seem to be any organised contact between departments or hospitals. Too many managers with weird expensive idea’s that don’t work, they’ve had at least two new (very costly) computer systems that didn’t work - the list goes on. Radical change is needed but seems impossible to do.

[DeKa]

I agree totally with many of the replies. You can do a subject access request (SAR), which is a palava, but the form will be on the hospital webpages, and it will take 30 days minimum to get whatever results you need. It’s a good idea to do that from time to time anyway, just to be a stronger co-partner in decision-making and continue to be expert in you.

All the best,

De

[Strumin210]

First I want to say that I am sorry to hear about you being recently widowed. I also pray that you will be strengthen to carry on in the times that you feel like giving up. I also went through that a few weeks ago myself, so I know what it's like. I can't imagine what I would say to a health-care worker that said the blood test results are confidential. I had that happen only one time and I told them this is my blood and I am the one that has the right to know the results. Needless to say I got it in about 20 minutes. Was probably not very nice. Blessings from myself and family here in (LA) lower Alabama. LOL . Have a very great year

[Gipsy123 in reply to Strumin210]

Thank you for your understanding.

[DJK12]

I look on with envy when people mention patient portals in England. NHS Scotland certainly lags behind with this and it is such a palaver to get results to be able to have an intelligent conversation with the consultant. I hope though you manage to sort out getting the blood tests efficiently.

However I've just had exceptional care at Edinburgh' s Western General. A very high temperature and pain in my spleen on a Friday night (why do these things always happen at night or weekends?) led me, because I'm on Ruxolitinib for MF, to phoning the helpline at the Cancer Assessment Unit. I was told to go there immediately and within 15 minutes of arriving was on an intravenous antiobiotic before copious tests and xrays in a very modern unit all very calmly and with good humour. Within 3 hours I had a bed and 2 days of excellent care first from the weekend consultant and then the MPN expert on Monday. While down for the x-ray I saw the queues at the Medical Assessment Unit and I should imagine Edinburgh Royal Infirmary's A&E was bedlam. Getting the bed so quickly was lucky - I once had to spend the night in the CAU but the trolley was swopped for a bed with a lot of apologies.

With all the problems with the NHS it is reassuring to have such gold standard treatment.

[Gipsy123 in reply to DJK12]

Agree on the very high quality of actual care, and the excellent individuals.at WGH. Patient portals sound good, hut are very limited in reality . Wouid like to have results downloaded straight onto my phone, or onto a data stick, so I can keep themneith me.